About Me

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Hi all, my name is Daniel, I’ve been fighting a rare form of cancer called Chordoma now for 10 years and it has greatly affected my life in many, many ways. I am now needing 24 hour care and now live in a care support community with that 24 hour support and care that I need. I am a nice guy with a loving and outgoing personality. I have been described by friends and the herald sun as -funny -bright -articulate -would be everyone's favourite nephew! My cancer is a rare tumour at the base of my skull. In 2001 I suffered a stroke when I was 16 that have caused me to be very unbalanced on my feet. I do have a few minor physical problems now also and require 24 hour ventilation to keep breathing; I am using a pacemaker device for my diaphragm (diaphragmatic pacing) during my hours awake and a ventilator when asleep. I am finally out of hospital and managing well with the help I get. I am Italian...yes even with the red hair! I love music and anything to do with it. I love movies to, my family, my friends and my faith in God is very important to me and is what I believe is getting me through this dreadful journey in life.

Tuesday, August 10, 2010

Tomorrows Surgery

I am in Sydney at the moment, we just saw Dr Teo (my surgeon) coz I am to go through another surgery to remove more tumor that is affecting my hearing...I can barely hear at the moment, I really don't want to become deaf on top of everything else - that will greatly affect my quality of life. So much is happening at the moment its difficult to explain it all with a text message. Dr Teo is happy and amazed as to how I am doing, I did tell him how hard we have had to fight hard to get to where I am now and I ain't stopping now! I am at the moment being admitted to the intensive care unit the night before my surgery because of the bad way my case manager basically scared the management here into thinking how very bad I supposedly am with the diaphragm pacing etc, they thought I was must have been almost a vegetable. I am still walking and talking enjoying life with my coffee making skills, movie watching, djing music loving friendly kind of guy!! Will add an update soon when I get my laptop. (this short message was texted from my phone earlier today, I was hoping it will go straight on my blog, but it went to drafts...I am still getting the hang of using this!)

Since then I have settled in and overcome the problems in melbourne I was having with getting an MRI scan done to check on my tumors but they didnt want to do it coz of the pacing even though the doctor that invented it and the guy who built the boxes wrote letters to them...maybe some nuts and bolts are missing in their brains coz the doctors in sydney are ok with doing the scan, I just have to be under a general anesthetic and ventilator as if I was having an operation done. so the scan will be done first thing in the morning and Dr Teo will do his best in removin as much tumor as he can but safely with out causing any further deterioration. I said to him I appreciate anything he can do for me.

We had a great hug and catch up. he told the other 2 surgeons from Vietnam in there all about me, my dirty jokes past and all the fun we have had over the years. He asked me to get for him the Steve Martin movie 'man with two brains' where Steve plays a neurosurgeon. I am downloading that as we speak! to end this post I want to mention my mother and the amazing best mum in the world she is. She has done so much (yet again) to get me here and is doing so much (yet again) in making sure things go well and I am understood...she is great at playing my interpreter!

I am scared...very scared about the surgery but I try (very hard) not to think about it because it is something I believe that really needs to be done and I really trust and believe in Dr Teo's ability's that all will be fine. There is also a huge added bonus on my side...the prayers and support of so many people, God and so many of the angels and saints.

Till next time (after the surgery)
Ciaooooooooooooooooooooo!!

- Daniel :-)

5 comments:

  1. Good Luck Daniel. Will be thinking of you and please have someone let us know how you are doing. Either on the blog or on the chordoma support group board on Yahoo.

    Sending positive energy and prayers! Sharon /NYC

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  2. Best of luck, Daniel. If a positive attitude can help the surgeon, you will do well! Joining in with Sharon, we all will be beaming prayers and positive energy your way.

    Judy/PA
    Chordoma support group

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  3. i have clivil chordoma too and it is hard because doctors dont know whats going on most of the time because its so rare .i hope your surgery goes ok! i look forward to reading more of your blog...
    mellimelwithchordoma

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  4. good luck with the Surgery Daniel, I am adding you to my prayers tonight, Our s yr old son Ben also had Clival chordoma this past 3 years and is recovering well from surgery at the moment from a reoccurance.
    Warren

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  5. all the best tomorrow Daniel , i am writing on belhaf of my yunger brother whom been dealing with a clivus chordoma since 2008 , he wishes you and i do to all the best and to get out tomorrow safe and sound ,,,

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